20 things to know if you love someone with dementia

Let’s face it. Sometimes it’s hard to love someone with dementia. My mother has Alzheimer’s disease, the most common cause of dementia. After several years of providing progressively more care for her at home, about two years ago she moved into a lovely memory care facility.

She used to be a rather formidable character to me and my siblings. With good reason. She was an Army wife and every two years or so, she had to pack up and move her growing family (8 kids!) to yet another state or country. She had to be tough and in charge.

Dementia has stolen some of that toughness. I say some because it’s still there. I’ve seen it — in the set of her jaw, the stamp of her foot, the glare of her eyes.

Fortunately, my mother is quite present in the moment, able to understand what we are saying and to offer her opinions. But over these past several years, we have had to learn how to accept the changes that have occurred and to communicate with her in different ways.

20 things I’ve learned about dementia

Here are 20 things I’ve learned along the way. I confess that I’m not always good at practicing what I preach. But I try. I try.

1) I could never argue with my mother. Now that she has dementia, I really can’t argue! She gets upset and I get frustrated.

2) Her disease is responsible for more than memory loss. Dementia can also cause personality and mood changes. It’s usually hard to change or control those changes. Sometimes it’s better to accommodate them and sometimes I need to take a hard look at what I might change about my own behaviors.

3) I try not to ask if she remembers something because she hardly ever does and sometimes she gets distressed that she doesn’t. She’ll say to me, “Honestly, Diane, my memory is just horrible.”

4) My mother is more than her disease. Memory and the ability to do things may be important, but they define only a part of her.

5) Try not to have expectations. I’ve noticed, especially with some of the other people my mother lives with, that things can change from day to day and moment to moment. Dementia seems to progress differently from person to person.

6) When she mistakingly refers to someone who has died in the present tense, I don’t correct her. If she asks outright whether someone is still alive, I tell the truth. There’s a difference.

7) Dementia can make life more difficult, but many people still lead active lives. My mother hardly ever passes up an opportunity to go on an excursion. She even went to a Sea Dogs game. I was floored!

8) She has a short attention span. Maybe she always did because she had to multi-task so much, but it’s more noticeable now. She is always distracted by what other people are doing. If I have something serious to talk to her about, we need to be in a distraction-free zone.

9) My mother is a pretty cool character, but she gets agitated sometimes. It’s usually when someone is telling her what to do. She hates that. Who doesn’t? But it’s especially hard when you have dementia and so much is taken away from you. I always try to remember that she is probably trying to hang on to some small measure of control in her life.

10.) If she doesn’t feel well, she may not be able to tell us what the problem is. Staff told me she woke up with a headache one morning, but when I asked her about it, she said, “Did I? I don’t remember.” You have to pay attention to little clues or behavior changes — they might be a sign of illness.

11) Don’t correct her when she’s wrong. It just makes her feel bad. Let it go.

12) If I’m taking her someplace, I need to let staff know so she’ll be ready (or not off on some wonderful excursion). There’s no need to let her know too far in advance because it just seems to confuse her. It does seem to be helpful to tell her the day of and to reassure her that there is nothing special she needs to worry about. I may leave her a note the day before to remind her what time I’ll be there and where we’re going.

13) She is sometimes suspicious of people. I try not to argue or disagree with her. Even when she insisted someone snuck into her room (it’s always locked) and stole her undies, I didn’t say it was ridiculous. Instead, I helped her search her apartment. I was about to admit she was right when I found them in the bottom drawer of her bedside stand. Right where my sister put them, so they’d be close at hand.

14) Look for joy in the moment. Like that moment we found her underwear. We sure had a good laugh over that one.

15) If your loved one gets angry or upset at you, don’t take it personally. I’m lucky. My mother doesn’t usually get angry or upset at me. When she does, I can’t help it. I do get upset. I hate it when someone is mad at me, especially my mother!

16) If she does gets upset, she can’t always tell me why. “I’m not sure,” she might say. “It’s just the way that I feel.” I try to find something I know will make her happy. A little piece of chocolate can work wonders!

17) She often repeats the same story over and over again. It can be really annoying, but I try hard to go with the flow. For instance, every time I go to see her she introduces me exactly the same way. “This is my daughter, Diane. My Munich baby.” We all smile and say, yes we’ve met and sometimes we let her tell the story (again) of how she carried me all the way from Germany (where I was born) when I was a toddler. Sometimes we gently and respectfully distract her. I try to remember that patience is a virtue.

18) It’s little things that usually make the biggest difference. Give my mom a hug, sit with her to look at old pictures, join her for a meal, take her for a drive in the country. These are things that make her happy.

19) Smile. Often. She loves it when I smile at her. The simplest gift of all.

20) Just love her.

Your situation may not be the same as mine, but dementia hands us many of the same challenges. What are some of yours? Are there things you’ve learned on this difficult journey that you can pass on?

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. Now she writes the award-winning blog Catching Health with Diane Atwood.
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Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. Now she writes the award-winning blog Catching Health with Diane Atwood.